adrenoleukodystrophy

Axel Wrede axel at nata.gun.de
Sun Mar 27 02:46:00 EST 1994


allanj at allanj.torolab.ibm.com meinte/wrote  am/the 24.03.94
zum Thema/ref. "adrenoleukodystrophy":


> I am interested in finding any information about this disease that was
> the subject of the movie "Lorenzo's Oil".

 Adrenoleukodystrophy or ALD is an inborn error of the fat metabolism,  
which causes the accumulation of very long chain fatty acids (C26)in  
nearly all tissues in the body, especially in the brain and myelin sheath.
 In the severe childhood form of X-ALD (since it is linked to the X- 
Chromosome) inflammatory processes in the CNS take place thereby  
demyelineating nervous tissue leading to rapid deterioration and early  
death. In the aduld form - called Adrenomyeloneuropathy (AMN) there seems  
to be "only" demyelineation in the spine, leading to ataxia. Often  
misdiagnosed as Multiple Sclerosis!
 The Lorenzos Oil is a mixture of oleic acid and erucic acid and both are  
capable of normalizing the often drastically increased values of C26 in  
the blood.
 This is part of a diet which restricts the intake of food high in C26  
(peanuts have the highest amount of C26)

The oil is the result of the engagement of Augusto and Michaela O d o n e,  
who reside at Washington, D.C.. Augusto has founded the MYELIN PROJECT,  
from which there exist several national branches (France, Italy, Great  
Britain, Germany) I am member of the head of the German branch of the  
Myelin Project. I am affected by AMN.

The idea behind the project is to accelerate the myelin research to find  
ways to remyelinate damaged areas in the brain and spine.
The myelin project is an international network of people who are affected  
by some kind of leukodystrophy (there are about 8 or 9 different forms  
known by now: Metachromatic Leukodystrophy, Morbus Krabbe, Canavan etc.)
and researchers from the NIH, the Mayo Clinic, the University  of  
Wisconscin, University of Cambridge UK, University of Lund in Sweden,  
University of Sweden, University of Munich, the Salpetriere in  Paris etc.

We engage in fund raising to support research which is therapeutically  
oriented. It is our aim to circumvent time consuming and bureaucratic ways  
of   funding research and it normally takes only a few weeks  to decide  
whether a research proposal will be funded or not.
We have financed several research projects and speed of biochemical,  
molecular and genetic research is somewhat breathtaking.

> are there any  sites on the internet where one could find information on  
myelin,  and  remyelination  experiments?

We are discussing the possibility to join internet.
Please turn to Augusto if you have special questions in respect to the  
Project, remyelineation etc.


THE MYELIN PROJECT
- German Branch -
posting address:
Dreizehnmorgenweg 35
53175 Bonn
Germany
       -----------------------------------
         axel wrede
           oswald achenbach str.17 a
             53 125 Bonn
               tel. 49 0228 29 88 49
                  fax. 49 0228 29 87 49
      -----------------------------------
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